TOUGH HEMOPHILIA DAY


The great thing about having hemophilia in the US is sometimes we get to forget about our hemophilia. I mean, it's always in the back of our mind, but sometimes it's so far back you almost feel like you don't have it. Today....is not one of those days. Today is one of those days that I wish I never had hemophilia.

As many of you know, I am getting ready to climb Carstensz Pyramid, the highest mountain on the Oceania continent, which means lots of training. On Saturday I over did it. I was working on my core and must've torn some muscles. On Sunday it just felt sore and I hoped that just kicking back and watching the Super Bowl and resting would help. By Monday morning I realized it wasn't just sore, it was a bleed and the damage had been done. I don't recall ever having an ab bleed before but it's miserable. Every movement kills. I of course infused but there isn't any instant relief. 

Today was even worse. Not so much the pain part but the missing out on something amazing part. Today is the start of a ski trip with my fiancé and some friends and I am sitting on the sidelines. I always find it tough to sit back while others have fun but instead of sulking like I used to I thought I would share some of my experiences with sitting out.

When this happened growing up I did something incredibly stupid, something 99.9% of bleeders do as kids (and even some adults), go participate anyway. My most vivid memory of doing this was in high school. I hurt my quad playing baseball, a pretty minor injury at first, but I refused to sit on the sideline. No coaches forced me to play I simply hid it from them so I didn't miss out. This obviously didn't end well. I ended up tearing the muscle and had a crazy bad bleed and missed months and months of baseball. I actually think my leg has never been the same. It's almost impossible to explain this to kids but man what a difference it would've made if I just sat out for a little while.

As I got older I became better about sitting out but then I started getting really depressed, something I still battle with today. When you're in pain not having fun while others are just plain sucks. I wish I had some magic advice to get over it but I haven't figured it out yet. As soon as I figure it out I'll let you know but so far the best solution I have found is to just think about the future. I am hopeful I can get on the slopes this week but I absolutely know if I went out today, I wouldn't make it long before I aggravate the injury and would be in intense pain again and for sure miss the rest of the trip. It doesn't make today easy but it does make it more bearable. 

Days like these make me angry towards my hemophilia. As a person that tries to live every day to the fullest, losing one seems devastating but there is a lot I owe to living with hemophilia. I know it's made me tough, probably tougher than 90% of other people and it gives me pride that I am tough. It has also made me think more critically about the decisions I make and about future consequences and benefits. I might not always make the best decision but I do know the possible results when making those decisions. And #1 it has made me appreciate the good days. Those days where hemophilia is on the back burner. I love those days and I know one of those days is right around the corner.

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